TRACY, dermatomyositis

In 2000, at the age of 43, I was diagnosed with polymyositis after a muscle biopsy and EMG test. My symptoms were extreme tiredness, Sjogren's syndrome, depression, fibromyalgia of the neck and headaches, and Raynauds disease. My blood CK level was 2,400 at this time.

I was commenced on large doses of cortisone (which gave me a fat face in time for my wedding) but it had a yoyo affect. Each time the cortisone dosage was reduced my CK level went up.

Eventually I was also given Methotrexate and Imuran but my CK level always hovered between 700 and 1000. Inspite of this delightful cocktail of drugs I progressed to Dermatomyositis.

The cortisone gave me high blood pressure and cholesterol so I was given tablets and diet to correct this.

In 2006 I felt so bad I retired from work and my husband was convinced I would not live to old age. After a bout of glandular fever I felt extremely tired and depressed. I also had "brainfog" so I couldn't think clearly and used to slur my words. In October 2006 I was browsing the net looking for new developments in the treatment of DM when I found this site. I immediately got a copy of Henry Scammell's book The New Arthritis Breakthrough and researched the MIRA report.

At this time I was seeing a panel of neurologist, immunologist and rheumatologist every six months and didn't dare ask them if I could try this new treatment. I approached my GP with all the information and he was happy to prescribe Minocycline for me as I "had nothing to lose".

In the first two months of the tablets my CK level went to 1050 and I felt like a had a dose of the flu. I kept reminding myself it gets worse before it gets better. The first indication the medicine was working was after four months when I woke in the morning with moist eyes. I was producing natural tears and didn't need the eye drops for the first time in years.

At the next blood test my CK had dropped to 495. Suddenly I had energy and was able to return to work. The depression went, I had greater muscle tone and no neck or head aches. For the first time in years I felt normal and had my life back. My CK continued to drop and I had the courage to confide in my neurologist what I had done. She was very supportive and impressed with the results, and promised not to take me off the antibiotics. I dreaded the thought of going back to the way I was in 2006.

I was taking the Minocycline according to Dr Brown's regime of one tablet twice a day on Mondays Wednesdays and Fridays. It made me very dizzy so I switched to Doxycycline. Even though the Doxycycline worked it wasn't as good as the Minocycline so I went back to this, one tablet every evening and no side affects. My pharmacist told me the blood pressure tablets I am taking block the absorption of the antibiotic by up to 43% so now I take the tablets two hours apart. I wish I had known about this treatment years ago and urge anyone to try it. I have since stopped taking the Imuran tablets and my ultimate goal is to stop the Methotrexate and Cortisone as well. I seem to go from strength to strength. My husband did not know me in my pre Dermatomyositis days and he, more than anyone else, has noticed the change in me. Thanks to Dr Brown I am enjoying life again.

Tracy Ferrari

I am happy to be contacted at ferrari55@bigpond.com

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